ROKIHub
a Rokitansky Community
ROKIHub
CONNECT. SUPPORT. GUIDE
There are more and more centers in Italy that deal with Rokitansky-Küster-Hauser syndrome, located throughout the country, from Sicily to Lombardy.
Here you can find an index divided by region and city, with a small presentation of the structure and their therapeutic approach.
RokiHub is a constantly updated reality, but we could not do it without your help, so we ask you to indicate any new reference centers
that could be useful to others.One of the main objectives of the RokiHub is to create a widespread network of Specialists, spread throughout the Italian territory (and hopefully also abroad in the future).
in various disciplines that can be of support to those who are part of the Rokitansly universe. The idea was born from the desire to create a real database service for patients
and families in the area closest to them, where they can feel
followed and guided by psychologists, psychotherapists, gynecologists,
Sexologist*, and other specialists in the sector.RokiHub has taken care to ask for consent and verify the suitability of the specialists before adding them to the database.
Some specialists have made themselves available to provide an initial
telematic support, through our FORUM, where you can interact with them directly.
In the following dataset you can find the reference doctors closest to you, based on your needs.
ROKIHub is based on three main pillars, CONNECT, SUPPORT, GUIDE, patients affected by Rokitansky-Küster-Hauser syndrome and their families.
Thanks to the experience gained over the years, we are
aware of how group meetings and not only, are of fundamental importance for the people involved in this life path.
Our Hub is constantly working to make these meetings possible, with various formulas: group meetings in person or remotely, preferably moderated by specialists in the sector;
meetings with private psychologists and psychotherapists,
Listening webinars where you can send questions
in the preparation phase of the intervention.
This is an ambitious goal and not easy to achieve,
but we are sure that with everyone's support it will certainly be
possible and achievable. ROKIHub will do its part to make this goal possible.The Forum represents a fundamental element of the ROKIHub world, and it is very important to understand how it works correctly in order to use it.
as best as possible so as to obtain and provide the maximum support possible.
Access to the forum is exclusive to those who are members of the site, the page is not visible to non-members.
There are three main categories into which it is divided based on the type of users you want to interact with:
- ROKIHub General Topics
Anyone registered on the forum can access, write and read this section. Specialists, moderators and site managers are admitted;
- ROKIClan
the exclusive clan for ROKI, only those affected by Rokitansky Syndrome can access, write and read this section, they are allowed
Specialists, moderators of the same category and site managers.
- ROKIParentsClan
the exclusive clan for ROKI PARENTS, only parents can access, write and read this section, Specialists, moderators of the same category and site managers are allowed.
For this reason, it is essential to correctly register on the site, indicating which category you belong to. Registrations on the site are accepted or not by the moderators and managers of the site.
The ROKIHub Mission
CONNECT.SUPPORT.GUIDES
Welcome to ROKIHub, a platform created to build a support centre, both digital and in person, dedicated to people affected by Rokitansky Syndrome and their families, including both families of origin and future families. ROKIHub is founded on the principles of collaboration, openness, and transparency.
We firmly believe that only by working together can we truly make a difference.
For this reason, we are already in discussions to establish partnerships with other associations and organisations, not only at a national level but also internationally. Our commitment is to include within the network specialists who can provide direct and indirect support to our members, helping to improve the quality of life of everyone in our community.
For ROKIHub, it is important to share with everyone who visits the portal the value of collaboration and unity. We believe that each person can offer a meaningful contribution to our support network by taking an active role, not only for their own journey, but also for the well-being of others and for the shared growth of the services we build together.
Together, we can build a strong and welcoming network to face the many challenges related to Rokitansky Syndrome.
We are currently working towards the creation of a formally recognised and structured association, drawing on the years of experience in support, sharing, and outreach developed by the members of the Hub.
DO YOU SHARE OUR VALUES AND WOULD YOU LIKE TO LEAR MORE? WOULD YOU LIKE TO BECOME PART OF OUR TEAM?
We have a detailed programme outlining our goals and works in progress (WIP) for those who wish to join ROKIHub.
News
What's new in the Hub! The Roki world is also constantly evolving, here's the latest news!
